A Novel Tool to Improve Shared Decision Making and Adherence in Multiple Sclerosis: Development and Preliminary Testing
Authors
Col, NanandaAlvarez, Enrique
Springmann, Vicky
Ionete, Carolina
Morales, Idanis Berrios
Solomon, Andrew
Kutz, Christen
Griffin, Carolyn
Tierman, Brenda
Livingston, Terrie
Patel, Michelle
van Leeuwen, Danny
Ngo, Long
Pbert, Lori
UMass Chan Affiliations
Prevention Research CenterDepartment of Population and Quantitative Health Sciences, Division of Preventive and Behavioral Medicine
Department of Neurology
Document Type
Journal ArticlePublication Date
2019-10-16Keywords
shared decision makingcommunication
multiple sclerosis
adherence
patient preferences
values clarification
image theory
chronic disease
Behavioral Medicine
Health Communication
Health Policy
Health Services Administration
Nervous System Diseases
Preventive Medicine
Psychological Phenomena and Processes
Metadata
Show full item recordAbstract
Background. Most people with multiple sclerosis (MS) want to be involved in medical decision making about disease-modifying therapies (DMTs), but new approaches are needed to overcome barriers to participation. Objectives. We sought to develop a shared decision-making (SDM) tool for MS DMTs, evaluate patient and provider responses to the tool, and address challenges encountered during development to guide a future trial. Methods. We created a patient-centered design process informed by image theory to develop the MS-SUPPORT SDM tool. Development included semistructured interviews and alpha and beta testing with MS patients and providers. Beta testing assessed dissemination and clinical integration strategies, decision-making processes, communication, and adherence. Patients evaluated the tool before and after a clinic visit. Results. MS-SUPPORT combines self-assessment with tailored feedback to help patients identify their treatment goals and preferences, correct misperceptions, frame decisions, and promote adherence. MS-SUPPORT generates a personal summary of their responses that patients can share with their provider to facilitate communication. Alpha testing (14 patients) identified areas needing improvement, resulting in reorganization and shortening of the tool. MS-SUPPORT was highly rated in beta testing (15 patients, 4 providers) on patient-provider communication, patient preparation, adherence, and other endpoints. Dissemination through both patient and provider networks appeared feasible. All patient testers wanted to share the summary report with their provider, but only 60% did. Limitations. Small sample size, no comparison group. Conclusions. The development process resulted in a patient-centered SDM tool for MS that may facilitate patient involvement in decision making, help providers understand their patients' preferences, and improve adherence, though further testing is needed. Beta testing in real-world conditions was critical to prepare the tool for future testing and inform the design of future studies.Source
MDM Policy Pract. 2019 Oct 16;4(2):2381468319879134. doi: 10.1177/2381468319879134. eCollection 2019 Jul-Dec. Link to article on publisher's site
DOI
10.1177/2381468319879134Permanent Link to this Item
http://hdl.handle.net/20.500.14038/41237PubMed ID
31667351Related Resources
Rights
Copyright © The Author(s) 2019. This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License (http://www.creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages (https://us.sagepub.com/en-us/nam/open-access-at-sage).Distribution License
http://creativecommons.org/licenses/by-nc/4.0/ae974a485f413a2113503eed53cd6c53
10.1177/2381468319879134
Scopus Count
Except where otherwise noted, this item's license is described as Copyright © The Author(s) 2019. This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License (http://www.creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages (https://us.sagepub.com/en-us/nam/open-access-at-sage).